Keratoconus my story – by Simba, 21

Hello I am Simba from South Africa, I am 21 and this is my keratoconus story. That’s me with the eye patch in the photo (left)

I started wearing hard contact lenses when I was in Grade 9 (15 years old) and the reason my optometrist gave was that my cornea was ‘rigid’. I always preferred my contact lenses over glasses for some reason. To add to this, my left eye is weaker than my right eye and at some point in my life – I lost focus and I developed a squint – yet every time I wore my contact lenses that squint was remedied.

I would not go anywhere without my contact lenses. I refused to have people see my squint. The only place I felt comfortable taking out my lenses was at home. I recall one day when I dropped my contact lens in the morning getting ready for school. My dad was waiting for me and I feigned sickness because I could not bear the thought of having people see me without my lenses, see me with my squint.

When I got to university, I dropped my contact lens sometime in my first year and stepped on it. The very next day I flew home to my optometrist to get new ones. The only reason my dad paid for the third pair of hard contact lenses despite their exorbitant maintenance costs as opposed to glasses was because I told him how vulnerable I felt without my contacts. That the squint took away confidence in front of people. I got a new pair of lenses and headed back to continue with my studies.

Everything was a blur

Some Friday morning in March of this year (2013) I woke up with really blurred vision in my left eye. It did not make sense to me. I thought my vision had worsened exponentially overnight, but nothing the trusted contact lens would not fix. You can imagine my dismay when I tried to put my contact lens in and it would not sit. Several times I would put my lens in and it would immediately nice up behind my eye lids. Panic set in. I put some sunglasses on his rainy day and walked to an optometrist close to the university. The optometrist thought I had an infection and referred me to the ophthalmologist who was luckily a 5 minutes’ walk away. Without an appointment I walked in there, and luckily this particular ophthalmologist was in on that Friday morning. She had merely come back to grab something she had forgotten since she donates her time to a local hospital in Fridays. I could not have been happier.

It was in this consultation that I found out that I had keratoconus. She explained to me that the reason I had RGP lenses was because of the shape of my eyes. She explained that keratoconus simply meant that my cornea blurs more than others. She then told me that what happened in the left we was a complication that some people with keratoconus experience – acute hydrops. When the Dua layer behind the cornea cannot bend anymore and it tears. So I asked her if this could be fixed on that very day, to which she told me it could take months. I was shattered.

The ophthalmologist gave me an eye patch to protect the eye from the sunlight. This worked well for me since I did not want people to see my squint anyway. And over the next few weeks I would go to see her. She then told me that I would need a corneal graft and recommended me to another specialist whom we say is the best at such operations. I would go to see him once a month and every time he would tell me the eye was still too swollen for surgery. Waiting for the swelling to go down took longer than I thought. It was only in about August when he told me that my eye was ready for surgery. However due to commitments I had, I could not do the surgery till mid-September.

As September came, I patiently waited for that phone call that never came. It was only last week Friday (25 Oct) that I for a phone call letting me know that the surgeon has found a cornea for me and would operate on the 31st. Joy. I literally saw the light at the end of the tunnel. On Monday (28 Oct) I got a call asking me if I was willing to swap dates with another of the surgeon’s patients. I took the opportunity and in Tuesday (29 Oct) I was wheeled in for surgery.

It is now day 2 after my surgery. Vision is still blurred but will get better in time. If I have learnt anything in 2013, it is patience. With regard to the squint – it is still there. But the surgeon assures me that as vision gets better it will fix itself since the brain does not like double vision. So I wait to see how things pan out. I am hopeful. And ever since I got the graft, I don’t so much mind people seeing my squint because I know it is something that are going to be a thing of the past. Here is my grafted eye with stitches- right.

Many thanks to Rae. How you found me on Twitter is beyond me but I’m glad you did. This is the first time I am sharing this story with anyone in full and in this much detail. May you continue to do the good that you do in people’s’ lives.

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One thought on “Keratoconus my story – by Simba, 21”

Thank you for sharing your story, Simba. I hope you have a smooth recovery too. I had to look up “squint” as I’m in the States, but had a feeling you meant strabismus, and yes–British English again! I have intermittent strabismus (not chronic) and other issues with the extraocular muscles (like eyes that are deviating out now). So, I understand and the strabismus happens when I’m tired or spacey and I tend to look down so people don’t notice. It can be corrected with surgery, but you need a very good surgeon to get the alignment right and I’m supposed to wait until it gets worse. I can barely wear contacts as I’m lens intolerant (a few hours a week and miserable), but it doesn’t stop my eye from wandering. Very interesting that it goes away for you. My strabismus showed up 2 years ago with the KC due to a genetic disorder, so there’s a connection I believe in some of us, but in those without, it is more common in people near the equator per a journal article I read (and who knows why?). In the US, I’ve almost always seen it in those who are east Indian or black.

Well, glad to know I’m not the only one and heal up! I’m so happy you have a good doctor–I have had great doctors from S. Africa. 🙂
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